Chapter Three

When Sam was young, people regularly gave me a copy of "Welcome to Holland" - an essay by Emily Perl Kingsley on what it is like to give birth to a child with disabilities.  It is a wonderful essay and you can find it here:
Welcome to Holland

Someone also gave me a book written about the same time called "Hope for the Families" by Robert Perske and illustrated by Martha Perske.  30 years later, it's still in print and available at Amazon.com.  The illustrations are beautiful.  One of the very first things he says is "Accept the fact that the 'child of your dreams' never was and never would have been.  All parents must acknowledge this sooner or later.  Your problem: You must do it sooner."

Sam wasn't what I was expecting, but he was pretty terrific.  No one gets the child they were expecting, life just doesn't work like that.  These two thoughts helped me come to terms with the reality of being Sam's Mom and got me started on our wonderful 33 years together. 

Chapter One of my life is the 30 years before Sam was born. Chapter Two is the almost 33 years we spent together. Now, if my mother is anything to judge by, I may have a Chapter Three! She's 86 and beginning to consider slowing down.

My plan, once I got used to the idea of being Sam's Mom, was that he would die before me but close to the end of my life.  Then I wouldn't have to wait very long to join him in Heaven.

Once again, life has thrown me a curve ball.  

This is rather a shock.  I knew in my head that he was dying, but I really didn't believe it in my heart. In the last couple of years, I did try to look ahead and make a plan for surviving him, but I was too busy taking care of him to really think ahead much and it felt like giving up.  And, honestly, I can't imagine a better way to spend my days than being Sam's Mom.

Only suddenly, unexpectedly, here I am, Sam-less and healthy.  Four months and counting into my new life and I'm ready to look around and figure out what to do with my days until I see my boy again.

It's not what I was expecting, but it's got some rather intriguing possibilities.

No one gets the life they plan on.  Life just doesn't work like that.

His Last Act Before Leaving Me

His last act before leaving me

Our souls were knit together
We were one
He took that for granted

How could he not?
Bone of my bone, flesh of my flesh
Heart of my heart

Breath of my breath

Symbiotic
His thoughts linked to mine
Serene
His faith that I would always provide

My last gift to him was death
He opened his eyes
Grinned
And said
"No love, let your last gift be chai
Now I am ready to go"

It is finished,
In Beauty

Household Saint

As Sam dies, he is leaving Charley and me with a legacy of love and gentleness. We are communicating and working together better than we ever have before.

Today is our 40th Wedding Anniversary.  Last night my friend (who is a respiratory therapist I got to know during Sam's many hospital visits) stayed with Sam so Charley and I could go out for our anniversary. It was such a blessing!  We went to Ravinia and saw Tony Bennet. It was a beautiful evening and we enjoyed ourselves very much.  Because we don't know anyone who is qualified to watch Sam, this wasn't a "rare" event. It was unique!  And we enjoyed it very much. I'm so glad I married someone who enjoys so many of the same things I do. 

Sam perked up and entertained his friend so well. Once again he proved he is a miracle worker. She is going through the most horrible things in her personal life and he gave her peace. They played Concert for George Harrison and shook bells and tambourines along with the music and she sang in her "atrocious" voice. (Her word, not mine). She looked so relaxed and peaceful when we came home. It was actually a startling difference. She kind of glowed. Sam is a wonder. I wish I could get her to come sit with him more often. She needs him!  Or maybe it was George...

Porch!

I wanted this to be a record of my precious Sam and his influence on my life. But the last few years have been so difficult that I really didn't have the heart to record anything. 

Now he is slowly dying and I am so afraid of life without him. I have always said that it would be better if he died first because there is no place that would take care of him.  As he declines, that becomes more and more clear.  Even Hospice has concerns about whether or not they can help in our tricky situation!

His death will mean the end of my life as I know it. I spend every minute of my life, waking or sleeping, centered around him. It is my privilege. It is all I really want to do. But he will leave a pretty huge sink hole in my life. 

Death will be the first place he has ever gone on his own, the first place I haven't checked out first to be sure it is safe. Somehow my faith doesn't help with this. I know I should believe he will be somehow better after death, but honestly, I'm not sure. 

But today is not a good day for dying. Today we managed to get out on the porch and neighbors came to visit and play music. Today he managed to communicate very clearly with me and he smiled a lot. Today was a good day. 

Ars Moriendi

My Bright Particular Star is fading

And when he finally collapses into himself

I will be trapped forever in stasis 

Around his Black Hole

Already I feel stretched to infinite thinness 

By the infinity of his dying

Pneumonia

Waking in a strange place, groggy from too little sleep, I can't remember where I put my glasses.  So bleary, groggy and frustrated, I begin to pat around; hoping I can find them with my hands rather than my feet.  Disoriented, I am not sure where I am, but I know where Sam is.  I don't need to see to find his beloved head and check that he is breathing and the tube is still in his nose.

He is okay.  The world shifts into place.  I remember that I carefully placed my glasses under the couch so I wouldn't step on them.  Now I can see well enough to attach the monitor to his finger and check his heart rate and oxygen level.  Yeah.  He's okay.

I slept on a mat on the floor by the couch.  Sam's sleeping on the couch, the oxygen tube still in his nose.  I'm in my own living room.  I remember Charley carefully not stepping on me as he went to work.

Time for tea and then I'll start his nebulizer treatments again.  I have to give the first one before he wakes up in order to get enough in each day.  He's not eating, I have to try to get him to eat something before 2.  He takes his next pill at 4 and he can't have any milk products between 2 and 6.  I never realized how large a percentage of the things he will eat are milk based - even Ensure!

Got a fabulous new cookbook called "I Can't Chew." It's full of nutrition advice and recipes for people with chewing and swallowing problems.  But I'm too tired to read it.  I'm too afraid I'll lose Sam before I have a chance to try all the recipes.  I look at the cover and go back to the trashy novel.  Or knit.  I thank God for yarn and trashy novels and tea when Sam is sick.

Two nights ago, I was sure he was sick enough to be admitted.  But, since I've been through this so often, I knew it was better to wait for the doctor's office to open than to call or visit the ER in the middle of the night.  You wait in the comfort of your own home instead of in a cold, hard waiting room chair.  But I couldn't sleep because I was so worried.  So I started packing my overnight bag.  At 8:45 I called the office, at 10 the doctor called me back.  After listening to my experienced, coherent report, she said, "Well, it sounds like you have everything under control.  I'll call in a prescription and, if he doesn't turn around in a few days, you should bring him in."

Under control?  I wouldn't describe it that way.  But it's a new day.  I found my glasses without the aid of my sight.  The tube which feeds air into Sam's lungs didn't get wrapped around his neck and strangle him in the night.  I don't have to think about what to wear, I'll just grab something from the overnight bag still sitting on the chair.  Himmat taught me how to make good strong Indian Chai recently.  On the whole, it's going to be a good day.

Walt Whitman

Darest thou now O soul,

Walk out with me toward the unknown region,
Where neither ground is for the feet nor any path to follow?

No map there, nor guide,
Nor voice sounding, nor touch of human hand,
Nor face with blooming flesh, nor lips, nor eyes, are in that land.

I know it not O soul,
Nor dost thou, all is a blank before us,
All waits undream'd of in that region, that inaccessible land.

Till when the ties loosen,
All but the ties eternal, Time and Space,
Nor darkness, gravitation, sense, nor any bounds bounding us.

Then we burst forth, we float,
In Time and Space O soul, prepared for them,
Equal, equipt at last, (O joy! O fruit of all!) them to fulfil O soul.

Found this poem by Walt Whitman on the back of vinyl record - Ralph Vaughn Williams put it to music.  When Charley read it to me, I thought he was sayingn "Old Soul" which makes a very poignant kind of sense.  I am reminded again that the path to enlightenment and the path to acceptance of death are very, very similar.  Both can be very good.  Or not.

Am I Too Old to Say OMG?!!!

I'm reading a novel which features a pair of "Elderly Oxford Dons".  I was startled to realize that they are the same age as Charley!  Which means, parenthetically, (or should I say Grandparenthetically) they are a year YOUNGER than myself!  The novel I read before this one was "Gaudy Night" by Dorothy Sayers and I'm realizing for the first time that the Dean of Shrewsbury College could be about 30 years younger than I am!  Well, she has been in her thirties since before I was born, so the first time I read "Gaudy Night" she was much older than me.  Does that make me feel better or worse?

I'm ELDERLY for crying out loud!

I told a friend of mine that I will turn 60 in August and she was shocked.  She said, "I had no idea you were so old.  I thought you were in your 40's!"  

"So did I!"  I responded.  I am totally surprised to suddenly find myself in this situation.  If "50 is the new 30", then I am about to turn 40 a second time and perhaps that's not so bad...

I'm fortunate to have a group of close friends who make "Elderly" look fabulous.  One of them hikes around Australia and muses about moving closer to her children at some distant future point when she gets old.  All of them live full and interesting lives.  Then there's my mother, who moved into a retirement community 6 years ago but hasn't allowed that to slow her down.  Well, maybe just a little.  I remember when my great Aunt Ruth was her age.  My mom would call me and say, "I'm so worried about Aunt Ruth.  She's slowing down."  And then tell a story about Aunt Ruth getting a speeding ticket.  When Aunt Ruth moved into a retirement community she was 90 and she wrote me a letter about the attractive men there!  So I imagine I have quite a few active elderly years ahead of me.

On the other hand, here's a limit to how far you can travel with the old saw about "You are only as old as you feel."  I mean there are things which, no matter how young I FEEL, it would be ludicrous for me to do.  Surfing comes to mind.  And coloring my hair platinum blond.  At my age, platinum blond would look more like Grandma Moses than Marilyn Monroe.  I notice my skin is getting drier and my hands are more wrinkly, but beyond that and some "creakiness" about my joints, I'm not deteriorating physically too much.  I still need to lose weight and exercise more, but that's the story of my life and has nothing to do with being elderly.  


So what's the big deal about "elderly"?  I think it is the fact that I'm much closer to the end of my story than the beginning.  It's been a really good story, all in all, and it's probably got some great chapters ahead of it, but I can see that the bookmark is moving much closer to the back cover and I don't want it to end just yet.  


I like to read my favorite books over and over again.  But I only get to go through MY story once.  This is probably the reason people write memoirs - or blogs.  

Enough, if something from our hands have power
To live and act and serve the future hour;
And if, as towards the silent tomb we go,
Through love, through hope, and faith's transcendent dower
We feel that we are greater than we know.
- William Wordsworth The River Duddon, 1820

Veteran's Day, 2010

My father, Charles A Repenning - World Famous Paleontologist and WWII Hero - (at least according to the Denver Post) requested in his will that he be cremated and suggested that his ashes be either thrown off the California Coast to sift down among his beloved Elephant Seals or encased in plastic key chains and sold as souvenirs at the Society of Vertebrate Paleontology's annual meeting.  He suggested that this latter method was probably the only way we, his offspring, were going to make any money off his demise.

Knowing how opinionated, controversial and downright cranky the old guy was, I have my doubts as to how much money his remains would net us even if the key chains were gold plated.

The former idea, however, has a lot of merit.  The elephant seals that come ashore on California's beaches are extremely crabby beasts.  Off shore there is a party going on that is the elephant seal version of Spring Break on Florida beaches.  The guys who come ashore are the ones who can't find a partner in the mating game.  Dumping his mortal remains out among a bunch of sex-starved, grumpy males just seems so right. They were kindred spirits, so to speak.  I could add details, but won't.

However, 5 1/2 years after his murder, his ashes are still in my Chicago garage.  I haven't been able to arrange or afford a trip to California to dump him.

This morning we woke to discover that Veteran's Day was going to be beautiful.  Warm, sunny and fall colors everywhere.  It just doesn't get better.  And Charley wanted to get out into nature, but had an errand to do in Oak Park.  I suddenly remembered that the park where my Dad spent his childhood was a couple blocks from the place Charley had to go.  Somehow it just seemed TIME.  So while Charley did his thing, Sam and I walked over to the park.  I've been there a couple of times in the last 5 years, thinking about Dad.  This park has a few animals in cages: a red fox, a coyote, some birds of prey.  It had the same animals, apparently, 70+ years ago when my Dad was riding his bike to this park.  This is where he learned to love nature and rocks.  He and his best friend spent every spare moment in this place getting really dirty and I think it is still pretty much like it was then.  Sam and I walked around a bit and then we found a pretty remote place beside a fallen tree.

I opened the urn I had purchased for Dad and poured out his ashes.  The urn is made of a single piece of agate.  I figured, while waiting to get thrown off a cliff, he'd be happier encased in a rock like that than in the plastic box the funeral home put him in.  I had forgotten, but I also had put in a fossil mouse jaw and some of his dog's hair.  I poked those in among his ashes.  We sat there in the sunshine a little bit and thought about Dad as a little boy - full of wonder and curiosity.  Dad had come a full circle back to innocence, back to the place where he was happy before the war, before disillusionment and disappointment and bitterness.  Instead of letting him drift among rejected suitors, I laid him to rest in a place of possibility and wonder and I gave him fossils and dog hair.  He's with the places and things he loved most in the world.

 And I felt more peaceful than I have felt in 5 1/2 years.

Rest in peace, you old goat.  I love you.